Thursday, December 4, 2008

Untouchables Become Miracle-Workers: Transforming Health Care

Much is said about health care, a subject that frequently borders on the dull. But in India, "health care" means the struggle between life and death, poverty and survival, superstition and rationality, being human and being nothing - "a stone without a soul". The unimaginable transformation of a small corner of rural India and those who inhabit it has a wider, deeper meaning for all humankind. What these people have done transcends ordinary heroics. It gets to the bottom of everything wrong, and right, with people.

This is the story of Sarubai Salve, Babai Sathe, and a mind-boggling "community health" (but really way beyond this paltry subject line) project called Jamkhed founded by 75-year-old Raj Arole and his wife Mabelle (who died in 1999) in one of the poorest areas in India. The idea was to provide health care for India's most destitute people, people without hope, people like the Untouchables.

Of course, we may know Untouchables as the lowest caste in the Hindu caste system of social stratification. Arole sought to reach the most impoverished people by training some of them, preferably among the lowest castes and most reviled, to be health care workers for the rest of their community. And the results have been jaw-dropping.

(Their native village of) Jawalke is a very different place because of Salve and Sathe. Salve has been doing (women's health care) rounds in Jawalke since 1984. By her own count, she has delivered 551 babies and says she's never lost a single infant or mother. "When I started, the children all had scabies and there was filth everywhere," she says. Small kids used to die. Pregnant women died during and after delivery. Poor sanitation led to malaria and diarrheal diseases. Children went unvaccinated. Leprosy and tuberculosis were common.

I ask Salve about Jawalke's health problems today. "Hypertension and diabetes," she says— rich-country illnesses. In most of rural India, only the fortunate suffer from such diseases.

They would perform services that doctors do not.

Even doctors who do treat villagers, moreover, rarely spend time teaching them about nutrition, breast-feeding, hygiene, and using home remedies such as oral rehydration solutions. They don't help villages acquire clean water and sanitation systems or improve their farming practices—ways to eliminate the root causes of disease. They don't work to dispel myths that keep people sick. They don't combat the discrimination against women and low-caste people that is toxic to good health. Doctors also present a powerful institutional lobby that can block the real solution for places like Jawalke: training villagers like Sarubai Salve and Babai Sathe to do all these things.

It's difficult to describe how these women became health workers without appreciating their background:

When Salve and Sathe started their work in Jawalke, they were destitute. As members of the Dalit, or Untouchable, castes, they were considered nonpersons, so reviled that higher caste people would throw out food if it even touched the edge of their saris. They went barefoot in the village, as Untouchable women were not allowed to wear shoes. Sathe remembers standing for hours at the local water pump—which she could not touch—waiting for a higher caste woman to take pity on her and fill her bucket. Salve was so poor she washed her hair with mud and owned a single sari. When she laundered it, she had to stay in the river until it dried.

It's hard to imagine living as a "nonperson", destitute, unable to touch the water pump to assuage one's own thirst. But it gets, if possible, even worse. Women's status in rural Indian society is so low, creating a sense of self was job one in transforming these women into the health care providers for their villages.

The health workers' first task was to transform themselves, beginning with two weeks of training on Jamkhed's campus. The Aroles' daughter Shobha, 47, a doctor who is now associate director of the program, conducted some of the training. "I would ask, ‘What's your name?' and they would say the village they come from and their caste. They had no self-identity," she says.

"They wouldn't look into your eyes or talk to you. They didn't even feel a woman has intelligence." Shobha's mother would ask the women, "Who is more intelligent—a woman or a rat?" "A rat," they would say. Shobha had the women practice saying their names in front of a mirror. She asked them, "Who is the one person who will never leave you?" Then they would walk behind a curtain to be confronted by the mirror. The training boosted their self-confidence. "Everyone can give technical knowledge," says Shobha. "What makes it successful is time spent building up their confidence." Training is an ongoing campaign: Every Tuesday many of the women return for two days to discuss problems in their villages, review what they learned the previous week, and tackle a new subject, such as heart disease. The women sleep on the floor under one enormous blanket they sewed together from small ones.

The idea is to improve the lot of people so poor, "health care" was a matter of bare survival, of staving off starvation and crippling diseases like leprosy. Doctors, says Raj Arole, cannot provide health care like local women-turned-nurses/midwives/healthcare providers.

A village health worker, Arole says, can take care of 80 percent of the village's health problems, because most are related to nutrition and to the environment. Infant mortality is actually three things: chronic starvation, diarrhea, and respiratory infections. For all three, you do not need doctors. "Rural problems are simple," Arole says. "Safe drinking water, education, and poverty alleviation do more to promote health than diagnostic tests and drugs."

In fact, local health care workers such as Salve can provide superior care to that of doctors, precisely because of their close ties to the community and their motivations being other than simply the "profit motive." Health care is ultimately about more than treating disease.

Even doctors who do treat villagers, moreover, rarely spend time teaching them about nutrition, breast-feeding, hygiene, and using home remedies such as oral rehydration solutions. They don't help villages acquire clean water and sanitation systems or improve their farming practices—ways to eliminate the root causes of disease. They don't work to dispel myths that keep people sick. They don't combat the discrimination against women and low-caste people that is toxic to good health. Doctors also present a powerful institutional lobby that can block the real solution for places like Jawalke: training villagers like Sarubai Salve and Babai Sathe to do all these things.

Although this approach is specific to rural India, it has much wider applications than that: most of the undeveloped/developing world is in dire need of such health care, and much of what keeps such care from people is the wrong approach. Jamkhed's example shows how sympathetic people from within the community can totally transform the lives of themselves and their villages. It is a transformation that involves education and regular, local, hands-on care by people whose motivation is not money, but rather a sense of fulfillment and pride. And compassion.

If you think about it, even in the "developed" world, there is a need for affordable health care. Were the day-to-day preventive medicine that keeps people healthy given to people in the community, it would certain both cut costs and allow people to receive basic health services without the intervention of expensive, profit-motivated doctors. And it would also help bring communities together.

And amazingly, these victims of the worst form of oppression have now become transformative, inspiring figures of prestige within their communities. Jamkhed's training has truly remarkable results. But importantly, the greatest changes have been in the mind, in conquering superstitions and fears and ignorance.

Perhaps the hardest territory to colonize has been inside people's heads, where superstition and stigma prevailed. To villagers in the Jamkhed area, disease came from the gods. When a new mother died from tetanus because a dirty instrument was used to cut the umbilical cord, no one would take care of the child, says Salve. "People said the mother would become a ghost and take the child away." There were superstitions surrounding basic nutrition: Pregnant women were not supposed to eat very much, and new mothers would wait several days before starting to breast-feed. And sufferers of certain diseases, like tuberculosis and leprosy, knowing full well they'd be shunned by their neighbors, didn't dare to openly seek treatment.

Little by little, Salve and Sathe have banished such attitudes, demystifying health. Leprosy, for instance, is now treated like any other disease, which it is—leprosy is actually difficult to catch and curable with medication. The change is visible in the hands of Sakubai Gite. Now 32, she is in her sixth year as a health worker in the village of Pangulghavan. She was in her teens when leprosy took parts of her fingers before it was cured. Her hands are gnarled and deformed.

Those hands are one reason Jamkhed wanted her. "We wanted to show that a cured leprosy patient can be a village health worker," Gite said. "Today I am even permitted to deliver babies."

Jamkhed also succeeded beyond anyone's imagination because it trains workers to be responsible and not to be dependent on doctors or other "superiors."

It provides an ongoing weekly link for the village health worker to the hospital, a mobile team, a source of drugs and supplies, new skills and knowledge, and perhaps most important, it keeps her in touch with her fellow village health workers, which helps her stay motivated. Also, Jamkhed's health workers train villagers to diagnose and solve their own problems. "It is unique in truly getting people's involvement," says Carl E. Taylor, a professor emeritus at the Bloomberg School of Public Health at Johns Hopkins University in Baltimore, and the world's foremost guru of community health programs. Taylor was the Aroles' teacher. "They were among the most stubborn students I had," he says. "They rejected anything that gave decision-making to the professionals and didn't involve the people."

And the results?

Among those that have been in the program for more than a few years, the traditional scourges—childhood diarrhea, pneumonia, neonatal deaths, malaria, leprosy, maternal tetanus, tuberculosis—have virtually vanished. Jamkhed villages have far higher rates of vaccination and an infant mortality rate of 22 per 1,000 births, less than half the average for rural Maharashtra. Almost half of all Indian children under age three are malnourished, while in Jamkhed villages there are not enough cases to register. In rural Maharashtra, 56 percent of births are attended by a health worker, compared with 99 percent in Jamkhed villages.

But the long-term results are more than just "health-related". This program has transformed the way people live and think.

Today, because of Jamkhed's business training and small business grants, its village health workers are no longer particularly poor. Salve, for instance, is one of the richer women in her village. She sells bangles and earrings, owns two houses, a flour mill, and, she proudly says, 15 saris; she also has a Jeep she rents out. This is a good strategy—the wealthier the health worker, the more weight she carries in the village. But it isn't the whole story. Perhaps the real secret of Jamkhed is how it motivates poor, sometimes destitute, women with overwhelming burdens to spend hours of their day on work that offers them no financial remuneration other than the occasional gift of a papaya from a grateful patient. Something clearly does. Most Jamkhed health workers are lifers. Very few leave.

The real benefits, the women say, cannot be measured in rupees. "When I started, I had no support from anyone, no education, no money," said Sathe. "I was like a stone with no soul. When I came here they gave me shape, life. I learned courage and boldness. I became a human being."In 2005 Babai Sathe, Untouchable, was elected the sarpanch—village leader—of Jawalke.

The statistics are startling, too. From starvation to ... now the health issues are diabetes and heart disease - diseases of the rich. The story is much more - please read award-winning Tina Rosenberg's entire article for total immersion in this moving story.